Real advocacy outcomes for Canadians living with Parkinson’s

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By Yvon Trepanier, Chair, National Advocacy Committee

In 2010, Parkinson Society Canada began talking to government officials and staff about the need for a national brain strategy with the goal of effecting policy change and investment in seven key areas:

  • access to care
  • caregiver support
  • income security
  • genetic fairness
  • public education and awareness
  • prevention

The Government of Canada responded, in June 2011, with significant commitments in the areas of brain research and caregiver support. Similarly, provincial governments are beginning to answer the call to support brain research and to examine the broader issues facing people living with brain conditions like Parkinson’s disease. Governments across Canada have made important investments. They are also beginning to look at policy with an understanding that living well with a brain condition is much more than a health issue.

Increased and accelerated science

Research drives innovation – the kind of innovation that leads to new treatments and, ultimately, a cure for neurological conditions like Parkinson’s. Over the next decade, the government of Canada will invest up to $100 million in brain research. These funds actually represent a significantly larger investment because the government funds will match donor funds. The net result is a minimum of $200 million in new funding to be invested in brain research over the coming 10 years.

Support for family caregivers

Caregivers play such an important role for the loved ones they care for and for society overall. It is critical that this role be recognized, appreciated and supported with meaningful measures that provide real assistance. In the recent federal budget (June 2011), the government of Canada committed to a new caregiver tax benefit of $2000 a year.

Several provinces are also introducing new policy to better support caregivers:

  • In Manitoba, Bill 42, the Caregiver Recognition Act was tabled this spring. The purpose of the legislation is to increase recognition and awareness of caregivers, acknowledge the valuable contribution they make to society and help guide the development of a framework for caregiver recognition and caregiver supports.
  • In Ontario, a Private Member’s Bill was tabled, in June 2011, to establish an annual $1200 provincial tax credit for caregivers. In tabling the motion, Ontario MPP Dave Levac said, “In doing some research, it looks like it would cost $41 billion across Canada if we started to pay for the caregivers who do this for their loved ones. It’s a testimony to their commitment and we should try to offset it (the cost) a little bit.”

Your support is critical

Recent advances at federal and provincial levels are an excellent beginning but much more is needed to improve the quality of life of more than 100,000 Canadians with Parkinson’s, and more than 5 million Canadians with neurological conditions.

We are seeing positive signs that the issue of genetic fairness is beginning to garner support from federal and provincial representatives. We will continue to advance recommendations to improve income security for families living with Parkinson’s. And we are always working to increase public awareness about Parkinson’s disease so that Canadians with Parkinson’s benefit from greater understanding and inclusion in their communities.

Your support for this work is critical. To learn more about Parkinson Society Canada’s advocacy program, please visit the Advocacy Centre.

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